Adults with autism and their families often left without help after high school

This is a guest blog post by Dr. Paul T. Shattuck. Dr. Shattuck is a national expert on disabilities, specifically autism. He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families.

Do the challenges of having an autism spectrum disorder (ASD) and the needs for special supports magically disappear in adolescence? No! But many families are pushed off a cliff when it comes to accessing needed services for their young adults with an ASD.

My team and I used data from a large national survey to look at the use of diagnostic medical services, mental health services, case management, and speech therapy during the first few years after leaving high school. In a report published this month in the Archives of Pediatrics and Adolescent Medicine, we found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech therapy. This compares with higher rates of service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy, and 63.6 percent had a case manager.

We also found that 39.1 percent were completely without all four of these essential supportive services. African-American youths and those from poorer households were at much higher risk for this total lack of services.

I was especially troubled by the low rate of accessing speech therapy. Youths with an ASD are especially vulnerable during this period because of their core challenges with communication and social interaction. Succeeding at a job, at school, or in the community depends on being able to communicate with other people. Speech therapy can help with these issues. But many insurance plans and state programs for vocational support or serving adults with developmental disabilities do not reimburse for speech therapy. Building in speech therapy as an eligible expense in adult-serving programs should be an immediate priority for policy improvement.

Why did I ask these questions? Many people who have, or work with, young people who have special needs already know that services drop off after high school. But there are many people and policy makers who have no clue about how dysfunctional these policies are. This study adds hard facts that can be used to educate and raise awareness about how the current system (mal)functions.

The majority of a typical lifespan is spent in adulthood. Yet the majority of what we know about ASDs is based on a lot of research focusing on very young children. I pursued these questions as part of a broader research mission aimed at understanding how to improve life for people with an ASD and their families across the lifespan. Autism Speaks, the Organization for Autism Research, and the National Institute of Mental Health have generously supported this ambitious agenda. I look forward to giving you more updates in the years ahead as we begin to build a stronger evidence base for helping adults with an ASD and their families have brighter futures.

I am concerned that my son has Aspbergers Syndrome…(spelling). His older sister on his father’s side has been diagnosed with it, and I have an inkling his father also has it. How do I find out? I have had our intermediate school system test him and all they could say was how intelligent he was. His pediatrician referred him to a therapist who referred him to community mental health who said, he’s just defiant. Be more strict with him. UGH!!!!! He has no problems at school because he just mirrors what the other kids are doing. He has no problems at daycare because it is a strictly structured enviroment. I see trouble ahead and I don’t want to wait till it happens if I can do something now.

Rebecca, get him to an ADHD center. See if you have one in your state. I live in CT, we took my son there & he got diagnosed with Asperger’s @ 16. We were abole to access help for him once he was diagnosed.

First of all just know that if he is Aspergers it is not the end of the world. but early intervention is most important. These children are intelligent and intervetions as easy as diet modification (no dairy or wheat) produce results. Schools will not diagnose because these kids pass test and usually score high. It is the social interaction that present themselves and lead to the diagnosis. Teh pediatrician is useless. Find a DAN doctor – Do Away with Autism Now. Because of a misdiagnosis of ADHD.

See if your county has a Regional Center. Your school district should have a SpecEd dept and they can refer you there for evaluation. My son was horribly diagnosed with every thing in the book until someone mentioned Asperger’s. I had him eval’ed, did some research and he is a text-book “Aspie”. The regional centers can offer a wealth of resource info. And don’t give up; if someone is telling u something that you know just isn’t right, keep pushing until you are satisfied. It may take a few tries before you find the person that clicks.

Good Morning…………How do we get to talk, chat???…..would love to learn from you…or at least get some insight from you… I have a “beautiful daughter..Samantha..(18yrs. old)…with Autisim….Most people I chat with have boys…Hence: my “Dilemma’…LOL….hope to hear from you…Thank you in advance……Denise Stephens………. p.s. where/what state do you live in….couldn’t locate that info …

To Denise, I feel yur pain! I also have an 18 year daughter with Autism! She is high functioning and the thing that we are dealing with now is boyfriends. All her peers her age have boyfriends and she wants one to! I knew this day would come and it hurts to see her so left out of the social life that girls her age have.

Denise

February 25, 2011 at 9:25 am

Sam (my daughter)..is “high functioning also” but she doesn’t talk..(can’t) we do lot’s of signing..lol we have our own way of communicating….she isn’t interested in boys..(though she IS a flirt) lol Sam “Doesn’t Get” That she’s different…(so perhaps not as “high” as your daughter…BUT YEA…my fear is that she will be taken advantage of by some ASS@#*les..(sorry) but for lack of a better word…I’m currently trying to figure out HOW to save money for her..without having her loose her bebefits from SSI..(they make it so difficult) to allow us (parents) to help with our childs future….I’m not going to live forever…and I “most Certainly DO NOT want to put this on anyone one else..(although I DO have a very loving family) and they would help me….but as we ALL know..EVERYONE has their own lives & families…. As for your daughter…You can set up “Play-Dates”..has she gone to any school dances?? (with you as a “helper’)..lol Is she in a regular class? or a “special needs one?

Denise

February 25, 2011 at 9:28 am

Rhonda Hodge :I too have a daughter with Aspergers Syndrome. She will be 17 next week. She has been talking more about boys as well and my biggest fear is that she will be taken advantage of. I talk to her very openly making her aware of the things she should pay attention to ensuring that this doesn’t happen. My daughter doesn’t worry so much about not doing what the other girls do….What she worries about is the day when neither me or my husband aren’t around! :-(

Denise :Sam (my daughter)..is “high functioning also” but she doesn’t talk..(can’t) we do lot’s of signing..lol we have our own way of communicating….she isn’t interested in boys..(though she IS a flirt) lol Sam “Doesn’t Get” That she’s different…(so perhaps not as “high” as your daughter…BUT YEA…my fear is that she will be taken advantage of by some ASS@#*les..(sorry) but for lack of a better word…I’m currently trying to figure out HOW to save money for her..without having her loose her bebefits from SSI..(they make it so difficult) to allow us (parents) to help with our childs future….I’m not going to live forever…and I “most Certainly DO NOT want to put this on anyone one else..(although I DO have a very loving family) and they would help me….but as we ALL know..EVERYONE has their own lives & families…. As for your daughter…You can set up “Play-Dates”..has she gone to any school dances?? (with you as a “helper’)..lol Is she in a regular class? or a “special needs one?

I too have a daughter with Aspergers Syndrome. She will be 17 next week. She has been talking more about boys as well and my biggest fear is that she will be taken advantage of. I talk to her very openly making her aware of the things she should pay attention to ensuring that this doesn’t happen. My daughter doesn’t worry so much about not doing what the other girls do….What she worries about is the day when neither me or my husband aren’t around! :-(

Dear Rhonda; I have a 24 year old daughter with higher functioning autism.It has been a real struggle to find serviices.I know what you mean about apprehension about society in general and men especially taking advantage.My daughter also fears when my husband and I are gone. I really wish i knew what to do..We have family overseas and sometime i wonder if it might be better there:-(

As the parent of a teenager on the spectrum, I am glad you are focusing on this issue. I have great concerns about losing services once he legally becomes an adult. I look forward to more updates. Thank you.

My son has the high funtioning Aspergers Syndrome. What we are noticing is that all his peers love being around him at social functions. But I never see him included in the groups when they just hang out together. As far as girls he never mentions anything to us about wishing to have a girlfriend but our hope someday the right girl will come along that will be bold enough to ask him out as I don’t think he wants to attempt it due to being afraid of rejection. All the young adults I talk to said he is a riot to be around but I don’t see him being asked just to hang out with the group. He spends his weekends at home or he is involved in theater groups he helps out with the younger children and does some productuons with theater groups around our area. At this point his only social life is associated with some type of theater or choir group. My wish is that the guys that say he is a riot to be with would just call him up and say join us were just hanging out today.

Autism is a type of disability where focusing on a particular field instead of everything else is just one type of the diagnosis. Once you understand how it relates to all of us and realize that everything with Autism and higher functioning Asperger’s Syndrome is in a nut shell just another step of evolution to understanding how to realize the complexity of life is very different but the same at the same time.
When people realize that this so called disability is can be frustrating and at times daunting you realize that no one person with Autism is alike, but each share a similarity in all of us. Sometimes it can be masked or not masked depending on the severity of Autism with the person. The problem with society and parents in general is the fact that many think or seclude their children without realizing the potential of their kid. Sometimes this isn’t the case, but parents and teachers wonder how they can help the child.
When you look at any Autism/Asperger’s Syndrome individual you got to look at them in their eyes. Not just how you look at them but understand where they are coming from. Some of these people have multiple diagnosis and some just have Autism/Asperger’s Syndrome. The misconception is the fact that all people with Autism/Asperger’s Syndrome can’t work a real world job. I totally disagree because some can be fully independent and work lets say a blue collared job or a simple job like a grocery bagger, etc. While other higher functioning Asperger’s Syndrome has the potential to fully functioning and doing great things in their field of interest.
Yes we all have social dyfectioncies, but at the same time what we lack we gain in other areas of the brain. For example, I can see patterns when others don’t see it. This enables me to overcome what I lack and understand. This patternizing helps me gather information like doing a scientific experiment. If you see one thing done repeatedly wrong you eventually will realize this doesn’t work and try it another way. This is how I operate and learn from spirituality how to evaluate myself to become a better person.
The other way I see things and learn from people is people watching and evaluating them as a whole person and realize what works for them and what not. Each day I try to mimic people and learn how quote on quote normal people operate and then modify it to my particular behavior.
The other way I see things similar to patternizing is what works and what doesn’t for all people and how it affects me and vice a versa. If say eating to much before bed makes my tummy hurt or makes me gain weight; then don’t do it. Same applies to how I act and if I know my body is getting out of whack then I need to take a break or do something else.

This is what I call a drunken stuper state… This means when I am overwhelmed or when I do too much at one time. My body goes into overdrive and then a day of going like an energizing bunny. Finally, then all of the sudden the next day I feel so out of it I got to chill out and rest for a day or a few days. This is when I or the person got to take a break before that happens or take a day off for themselves.
Sometimes with Autism a particular diet is in order so that they function a lot better. Some work better with a gluten free diet or some have food allergies that make them hypersensitive to other foods. Sometimes they love to eat something over and over again for a length of period of time, but then don’t like to eat it after a while. It is similar to the eating habit of a woman who is pregnant.
With medication for some it does work and some it does not. My own personal option is the fact that if you have to take meds for yourself; then do it. But if you can get by with lesser meds or more vitamins then meds then go for it. What works for one Autistic child doesn’t work for all. Each one is different in their own right. There is what I stressed because every time you think you understand this type of disability it is like a pattern. You can generalize it for everyone but you got to individualize it for all as well.
My own theory to understanding the emotional state of myself relating to a person with Autism/Asperger’s Syndrome is simple. We all can be impulsive shoppers or do impulsive things. We all can be neat and tidy; while others be messy or really messy. The hard part with any one of us is how to look at these impulsive tendencies and look at their consequences of the actions. Once you look at it at a third party point of view and realize what everyone is doing besides yourself; then you can see the surroundings of how it works before, after or during it happens. Once you realize how everything works and the hard part is understanding the consequences of your actions and how it affects everyone else is the hardest part of any person with Autism.
Once you realize how to be positive, have faith, believe in yourself and never give up or give into your negative emotional tendencies. You realize how it all works and once you realize how to overcome your past life tendencies and how it relates to yourself now; if you believe into that. Plus with any Autistic person having good morals and ethic standards helps out a great deal.
Behavioral modification and understanding how everything works or don’t works will help out any Autistic person understand how life works. Sometimes the best way to approach this is let them talk it out how they did or didn’t work things out. Sometimes giving a life scenario helps out by just walking around a mall or just sit on a bench and people watch helps out a great deal. Learning how you work and what makes you tick for any individual will help them out. Once you realize the strengths and weaknesses of yourself and how it can benefit you whether in working in the real world or in personal relationships will help out a great deal.

Some things that help me balance myself out are: sometimes the best thing in life for me personally is just taking a break and sitting on a park bench in the park and just do nothing. Other times just walking around somewhere and venting steam helps and other times just talking it out helps me out a great deal. Sometimes just doing something completely opposite from what I am doing makes me come back to it stronger than before if I was looking at it for a long time. Other times just taking a cat nap rejuvenates me or meditating to relax and refresh my mind helps my mind to become sharper or relaxed. Other times just taking a break and eating in a restaurant and what I call “shoot the shit” meaning talking about nonsense and not anything important can ease the mind. With all people we all need a break at least once a week so we all can relax and unwind with good people around us.
The problem with all Autistic people is the fact that boundaries and nonverbal communication is a big problem. Once people realize that not all people with Autism/Asperger’s Syndrome can or can’t communicate is a big key. The bigger key is diagnosing it at an early age because the earlier you diagnose the more likely you can help the child along.
The biggest problem with me and many other people with disability is some scientist want to cure this disability instead of helping them out become better people. Once people realize this disability is just what you can a genetic modification and realize that we all have tendencies and we are all working on them day to day. That is the beauty of it all. Once people realize this modification is an understanding of something greater; you then realize how much people can learn from all of us.

The Dr. needs to read the “feedback” on this blog on FACEBOOK. The comments need to be read. Support does drop off after high school. College is a possibility for high functioning autistics. If you have an extra 3 – 5K lying around your college age child could get total support at Marshall University..this is in “addition” to tuition, fees, boarding etc. Parents, don’t give up. I urge Dr. Shattuck to read the comments on FACEBOOK.

Linda Edwards :To Denise, I feel yur pain! I also have an 18 year daughter with Autism! She is high functioning and the thing that we are dealing with now is boyfriends. All her peers her age have boyfriends and she wants one to! I knew this day would come and it hurts to see her so left out of the social life that girls her age have.

Services for adults with autism spectrum disorders are a problem everywhere. I live in South Australia and I spent 18 years trying to have my son (autistic with intellectual disability, and non-verbal, now 35 years old) relocated from a supported group home in Sydney, New South Wales, to an equivalent home in Adelaide, South Australia. Funding for disability services here in Australia is a Federal Budget issue. Funds is allocated to an individual via the state service. When we moved from New South Wales to South Australia in 1990 we were not able to access funding to have our son moved, because disability funds are not transferrable between states. It took us 18 years to lobby the disability services in this state to create “new funding” for a supported accommodation placement. He lives in this city now, and we can have him come and stay with us of a weekend. (It used to take us two days of driving to reach Sydney, where we had to find accommodation, simply to visit him when he lived there. It was a very stressful time, which I am glad is now over.